Activating a Support Community for People with Lung Cancer

PUBLISHED3 November 2015

Although lung cancer is the leading cause of cancer death in the world, the disease has long been stigmatized, leading to a sense of isolation for people already struggling with the considerable upheaval of a lung cancer diagnosis. Many living with this disease have said that connecting with others who also have a lung cancer diagnosis can inspire them to learn to “live with lung cancer.”

Through a new program called LVNG With (pronounced “Living With”), three leading lung cancer advocacy organizations (Bonnie J. Addario Lung Cancer Foundation, Free to Breathe, and Lung Cancer Alliance) along with AstraZeneca are activating a community of people living with lung cancer and their loved ones, to share their experiences and inspire one another. More than 100 people with lung cancer and their loved ones contributed to the development of LVNG With by sharing personal stories about their emotional journeys and everyday lives.

The stories shared on the program’s website, LVNG.org, are authentic insights from patients, for patients. AstraZeneca connected personally with each person who shared a story and we were inspired by their generosity and willingness to help support others with lung cancer, whom they did not even know.

Richard, diagnosed in 2004, shares his perspective on getting connected:

“I didn’t know what to make of it. I wasn’t angry, I wasn’t scared. It’s really important for someone to have an advocate when they go through these situations because mentally I couldn’t really do anything. It went in one ear, out the other. It came out of the blue. If I was giving advice I’d say get on the phone, go online and check out Lung Cancer Alliance, check out United Against Lung Cancer – they’re a great source for you. I am now a Lung Cancer Alliance board member. I never imagined myself being an advocate for lung cancer. But I really do feel I need to be a voice. There need to be people who can speak out for lung cancer and give other people hope. Most people think of lung cancer as a death sentence, so to hear someone saying they’ve survived eleven years, it makes them feel really good.”

“…There are resources available to help with travel expenses. For instance, the American Cancer Society has Hope Lodge locations where you can stay for free near major cancer centers (requires advance reservations), or may help with hotel costs. Some organizations will provide rides to get to and from the airport or to treatment centers. Some services like Cleaning for a Reason will clean your house for free. Others like Patient Access Network Foundation will help with co-pays for prescription drugs. Some pharmaceutical companies will provide targeted therapy drugs at a substantial discount to those who do not have adequate insurance coverage.”

Dann, diagnosed in 2006, shares the impact of his diagnosis on his friends and family:

I have made a real effort to become even closer to them. For example from my granddaughters for Christmas, what I asked for was to have one day alone with each of them and so we went out and shared a lot of activities. That’s a day that I’m still treasuring now more than a year later, so I asked for the same thing this year and they’re both looking forward to the time.

“There are a lot of things that aren’t good about cancer, but I’d say about 95% of it has been really positive for me, and family relationships and friend relationships are a really important part of that. A lot of that comes from me reaching out to them and being a lot more honest about what’s going on. I share what I’m afraid of, what is working well for me, what are my hopes, what’s the next treatment coming up, I share some humor. And what I get in return from them is love. They extend themselves much more than I ever expected and I learned how much more they care about me than I realized. This is way too hard to do on your own. You really need to have the people you care about around you.”

LVNG With was developed to stimulate, inspire and connect a community of people living with lung cancer. Join us in helping people unite, to move from a sense of isolation to a place of inspiration. If you know someone who is facing a lung cancer diagnosis, please share LVNG.org as a resource or invite him or her to attend a LVNG With live event. We plan to add new stories to the LVNG With website on a regular basis. If you wish to contribute a story, sign up to keep in touch.

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